With Thanksgiving, Christmas and New Year’s holidays approaching, the pulse rates among many special needs family members are already rising. What is on the minds and hearts of family members affected by disability or mental health difficulties is even more complicated this time of year. For siblings, some of the reasons may be obvious while others are not so straightforward.
What might special-needs siblings be missing at holiday time?
Family Traditions & Fun— During the holiday season, young people typically enjoy a host of special events and parties. There are family road trips, holiday cookie baking, decorating the Christmas tree, going sledding and skating, hanging stockings, and the list goes on. In the special needs family, the opportunity for these things, let alone the ability to really enjoy them, may be difficult or impossible for a sibling. They may even have learned from a young age not to ask for or expect special things to happen during the holidays because they understand that everything is more complicated in their family.
Time with Extended Family— Typical families enjoy grandparents, cousins, aunts and uncles, meals crowded around the dining room table, puzzles on card tables, late-night games and fun holiday movies with popcorn. Special needs siblings often have limited opportunity to gather with family and friends. Fancy dining tables can be at risk around a sister with Angelman Syndrome, wiggly card tables might get bumped by a brother with autism, evening games and movies are likely to be interrupted by a sibling whose complex bedtime routine requires the attention of both parents.
Happy Parents— Caregiving parents are often more stressed than usual at holiday time. School is out, respite staff is on vacation and grandma is busy making turkey. It’s not uncommon for relationships with extended family to be strained. Believe it or not, there are many families with special needs whose relatives simply don’t invite them to gatherings any more. Parents may avoid family gatherings if they have been hurt by comments from insensitive family members, are haunted by disappointment when surrounded by extended family relaxing in “normal” holiday socializing or find it overwhelming to travel with the complex needs of their child. Typical siblings may be the ones who miss out most. They observe parents wrestling with disappointments, discouragement, loneliness/isolation and fatigue. They notice everything (often silently) and experience sorrows of their own.
The Gospel— Distractions and distortions related to Jesus’ Good News are countless, for every family. But for special needs families, there are even more factors that may keep them away from church at Christmastime. Yet, the true meaning of the season—giving thanks, receiving Jesus and experiencing fresh beginnings—has the potential to strike its deepest chord when someone is feeling weak, alone or deeply challenged.
How can your church help?
Empathize with the nuances of their situation. Notice what’s hard. Acknowledge that even the simplest hopes and needs of the season can be unlikely, impossible or overlooked in households affected by disability or mental health difficulties. Special-needs siblings can experience inadvertent neglect at home. At church, their unique challenges can feel invisible or unimportant. Each family member can encounter grief triggers and reminders of disappointment from many directions. That includes siblings. It can feel emotionally and spiritually exhausting for special needs family members to keep their own spirits up without understanding, encouragement and prayer from others. It’s not helpful to have their struggles minimized. It’s tremendously refreshing to have them appreciated and shared.
“But God has put the body together, giving greater honor to the parts that lacked it,so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.” 1 Corinthians 12:24-26
Be a creative partner, especially in fostering spiritual-social connections. Caregiving parents are consumed daily with the need to solve problems, think creatively and advocate for critical needs and services on behalf of their child with disabilities or mental health difficulties. They often run low on energy when it comes to navigating church involvement, let alone extra holiday gatherings and social activities for their typical children. They may also wrestle with guilt (and maybe even a whiny child who feels cheated, yet again). Greatly appreciated are those friends and leaders who are willing to help proactively enhance a sense of belonging for every child in the family in the life of their church—whether they have a disability or are the sibling of someone who does.
“Since they could not get him to Jesus because of the crowd, they made an opening in the roof above Jesus by digging through it and then lowered the mat the man was lying on.” Mark 2:4
Include, include, include. And don’t assume. Special needs siblings may face obstacles to participating in holiday activities like Christmas choirs, musicals, fellowship group parties or doing readings and candle-lightings for the Advent Wreath. You might assume that a family whose young one has autism will not be able to participate. Invite them anyway. Honor them with the choice and give them opportunity to feel wanted, even if they have to say “no.” Better yet, help make it possible. For example, a special needs family in your congregation may do the Advent candle lighting with an extra buddy helping with the children. You may need to model extra grace if you have a student who is late to rehearsals. (Let’s not punish a child for having a sibling at home who has a 10-minute seizure, difficult meltdown or untimely bowel movement before mom can jump in the car to bring their sister or brother to church.)
“Jesus said, ‘Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.’” Matthew 19:14
Foster family bonding. One common reaction to the changes in routine and general excitement during the holiday season can be for caregivers to appear less flexible, more controlling, more irritable—in other words, harder to help. This can actually be symptomatic of post-traumatic stress and many family caregivers (young siblings included) experience it. I’ll be honest, sometimes I have turned down help because having someone enter into my “autopilot” feels harder and more complicated than just pressing through. Maintaining a sense of control when much of life feels out of control, can be stabilizing and help maintain some peace in the midst of the holiday “storm.” Over time, I have been learning to put the cost of my inflexibility in perspective and recognize that it is our children who pay the highest price when I don’t accept support. It is always easier for me to accept help when I realize the gift it is to our children or my marriage. A humble accountability partner who is attentive to and gracious about these unique dynamics can be a huge blessing to a family. Sometimes a parent just needs reminding that receiving help will greatly benefit their typical children and their relationship with them.
“Be completely humble and gentle; be patient, bearing with one another in love.” Ephesians 4:2
Patiently persevere in helping siblings experience meaningful traditions. Early in our marriage, my husband and I loved attending a midnight mass with extended family. Years later, our typically-developing children were involved in candlelight services at our own church but we were unable to attend together as a family. Their sister needed a consistent bedtime routine and wouldn’t have cooperated for the subdued worship atmosphere in the middle of the night. Caregiving staff are hard to come by on Christmas Eve.
You might ask a special-needs sibling if there is a Christmas tradition he/she wants to experience. Then pray about how you can come alongside to make it happen. Consider the potential impact from simple but loving expressions of support:
Can we have a student in our youth program push your son’s wheelchair/stroller for you at the mall while you do some Christmas shopping with you daughter?
My son/daughter is going to be in the Christmas choir/musical and I wondered if we could pick up your son/daughter for rehearsals?
One of our senior women is offering to fold laundry or watch a movie with your special needs child while mom and/or dad share some focused time with the other kids decorating a tree, visiting a Nativity play, making some cookies, or going caroling.
Our small group wondered if we could come wrap Christmas presents for your family so you might have extra time to enjoy a meaningful tradition with your family.
What can I do to help you enjoy something about Christmas this year that is ordinarily hard because of the special needs in your situation?
“For the entire law is fulfilled in keeping this one command: ‘Love your neighbor as yourself.’” Galatians 5:14
When young ones, in particular, feel like they’ve drawn the “short stick” at holiday time, their parents can feel tortured by guilt, grief and increased loneliness because of it. On behalf of parents everywhere who are raising challenged families, I want to say “thank you” to leaders who are taking time to prayerfully ponder, be sensitive to, and invest in the experiences of their special-needs families throughout this beautiful holiday season. Your gift of love can give joy to an entire family.
Lisa Jamieson is an author, speaker and advocate who founded the Minnesota Disability Ministry Connection and serves as executive director of Walk Right In Ministries. Lisa’s daughter Carly, was born with Angelman Syndrome. In their first book together, Finding Glory in the Thorns, Lisa and her husband, Larry, recount the early years around Carly’s diagnosis and what happened when the community loved her. Since then, Lisa has authored the Finding Glory Group discussion curriculum, Living Your Glory Story, and the children’s book Jesus, Let’s Talk which celebrates young people of all abilities from around the world and highlights key prayer words using American Sign Language.